The resources available to support your loved one can often be finite, limited, or difficult to access, which means one of the most important roles you can play as a guardian is that of an advocate. Others will likely join your advocacy team, but you’re one of the few who will remain constant.
As an advocate, you’ll want to consider these things.
Understand the diagnosis and all symptoms
Do your homework to better understand everything about your loved one’s diagnosis. Use multiple sources when researching—you can often find more information through your medical providers, disability-specific nonprofits, or through other caregivers.
You can also find many disability-specific organizations online, such as Autism Speaks® or National Down Syndrome Society®. In addition, several nonprofits that serve persons with disabilities are dedicated to education, support, and advocacy. Many of these organizations will have local chapters to allow for greater and more personalized engagement.
Know the rules of engagement
Learn as much as possible about the eligibility guidelines and rules for accessing support services for your loved one. This includes how and by whom decisions are made.
Keep good records
Many caregivers choose to put everything in writing, whether it’s their first request or a summary of any meeting or conversation. Having a good system, whether digital or on paper, will keep you on track as you create and update your plan.
Know your rights
Laws and regulations give people with disabilities certain rights, so be sure to acquaint yourself with those rights, and be ready to ensure those rights are being enforced for your loved one.
Here are a few of the major federal protections: